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Old 06-04-2010, 05:13 PM   #1
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pattianne24 HB Userpattianne24 HB Userpattianne24 HB User
new here, I have had polymyositis

I have joined several forms and read all i could about this illness. I realize that not all of us suffer the same. My muscle weakness is mostly in the legs, and the pain is horrible. I have had cronic severe pain for 15 years now. I have been on several prescriptions, currently take morophine and oxycodine. My legs have gotten so bad that I can't walk 1 block. My husband of 43 years died suddenly and now I am left alone to battle this on my own. As much as I want to get on with my life this illness is holding me back. I don't know that there are any answers for me. I responded well to prednisone and also took immuran and methatrexate for this illness. Unfortunately these meds can cause other problems, one of the side effects of the immuran was early cancer and I needed a hysterectomy. It is a nasty illness, and seems that when you get one autoimmune illness others follow, at least this has been my case. I now also have hypothyroidism, and psoratic artheritis in most of my joints. As I said, all I can do is try my best each and every day and try not to worry. Life can really suck and to think I might have another 25 or 30 years with this makes me terrified.

 
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Old 07-26-2010, 12:17 AM   #2
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Re: new here, I have had polymyositis

Hi Patti,
I am 56 and have had Polymyositis since 1996. It sounds like you have the answer, that is...not to worry about the future and what might be...but stay in the moment and take each day at a time. Some days are better than others aren't they? Keeping your mind active and enjoying life around you as much as possible all helps. I love to paint and art has been my saviour in many ways. When I paint it has my total concentration and joy. Surround yourself with things that give you joy, be it a bunch of flowers on the table, stroking your pet, listening to music, sitting in the garden seeing the wildlife. It is all so easy just to focus all the time on the disease and the negatives. It is ok to be depressed, everyone experiences that, even people that have normal strength. We are our thoughts. Peace and happiness up to you.

 
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Old 07-27-2010, 09:14 AM   #3
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Re: new here, I have had polymyositis

Thank-you for your reply. We have no choice but to slow ourselves down and try as hard as we can to keep a positive attitude. It has not been easy for me to do so. My husband and best friend of 47 years died suddenly and when I am having periods of bad health, I think about him the most. He was there for me, did what he could, I will love him forever for that. I am 63, diag with this illness in 1995, had perfect health prior. I was out in my garden first thing today, enjoying the beautiful colors and listening to all the birds. Keep ones life simple is the key. Try to not think of what is going to happen as time goes on, we are getting older and to me that means we will have new issues to deal with.
Take care of yourself, and I understand that is sometimes not easy to do.
Pattianne

 
Old 07-27-2010, 08:46 PM   #4
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Re: new here, I have had polymyositis

Quote:
Originally Posted by pattianne24 View Post
I have joined several forms and read all i could about this illness. I realize that not all of us suffer the same. My muscle weakness is mostly in the legs, and the pain is horrible. I have had cronic severe pain for 15 years now. I have been on several prescriptions, currently take morophine and oxycodine. My legs have gotten so bad that I can't walk 1 block. My husband of 43 years died suddenly and now I am left alone to battle this on my own. As much as I want to get on with my life this illness is holding me back. I don't know that there are any answers for me. I responded well to prednisone and also took immuran and methatrexate for this illness. Unfortunately these meds can cause other problems, one of the side effects of the immuran was early cancer and I needed a hysterectomy. It is a nasty illness, and seems that when you get one autoimmune illness others follow, at least this has been my case. I now also have hypothyroidism, and psoratic artheritis in most of my joints. As I said, all I can do is try my best each and every day and try not to worry. Life can really suck and to think I might have another 25 or 30 years with this makes me terrified.
Pattianne: I see that you responded well to prednisone and methatrexate but do not have those drugs now because of the side effects, right? I was diagnosed almost two years ago. Responded well to prednisone, in April CPK had gone up again and in June, it had gone to 450 (after a year in the 100's; it got as high as 6,500 before the meds). Now, I am injecting methatrexate once a week with idea that it will absorb better. Question is this: did you do injections? I am not in pain but feel really tired out--just draggin' tonight. I have the idea that things will get worse, not better. At least I read that injections is a second line of treatment. Arrrrgghhhhhh! Good luck to you. We may need some good luck, don't you think? I just wonder what happened!
julie

 
Old 07-28-2010, 07:52 AM   #5
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Re: new here, I have had polymyositis

Julie,
I was on prednisone for almost 12 years, of course the amounts went lower and lower till I finally said to my doc that I didn't want to take anymore. I went off the methatrexate after maybe a couple of years, no injections just the pills. My CPK went to a normal level and has only increased slightly when I get stressed. I have had this illness for 15yrs. Sorry to say that things do not get any better, if you stay the same we are truly lucky.

 
Old 08-01-2010, 08:40 PM   #6
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Re: thanks for note!

Pattianne!
I forgot to say that I took methotrexate pills along with prednisone (started at 40mg a year and a half ago). Still on 7-1/2mg prednisone but now inject the methotrexate. It's not altogether new because I took it along with cytoxen 30 years ago during chemotherapy for breast cancer. Read that cytoxen is also used for myositis. I don't think I could face that again. Wonder how you knew you were developing the myositis? Ached all over and then found that you couldn't do things--like go down stairs easily or upstairs? Or blood test early on? Did you have a muscle biopsy? Muscle biopsy on me turned up nothing--except four months later, I had a blood clot in each lung. It took so long for lungs to clear out that I don't know if ache in chest is related to the clots, myositis or if I'm having a heart attack. Have you had pain in chest or difficulty swallowing? I've never gotten a lot of sleep but think I have to now. Did you ever think that you should have a second opinion? I don't want to put out more money. Need to have confidence in doc, agree? I wonder where it came from and I think I ought to get better. Were you ever on cholesterol drugs? There is something going on with thyroid now. Arrrrrrgghhhhhhhh! Tomorrow is injection day. I don't like that either. I am so sorry that you lost your husband because he was such good support for you.

 
Old 08-02-2010, 08:53 AM   #7
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Re: new here, I have had polymyositis

I was going through a period of being exhausted, worked at a train station, I would have to go down many stairs to get to the tracks. One day after putting in a very long shift about 14 hours, I came home and I swell up. My legs, feet, ankles were twice the size they should have been, I could not put on shoes. This took months to find out what was happening to me. My specialist thought it was mytosis. He did blood work, which came back with elevated levels, but not too bad. They then did a biopsy and found that I already had scar tissue in my arm and leg. I was diag with polymyosis then. Took high doses of prednisone and immuran and lost almost 20 lbs in water weight. I don't have chest pain or trouble swallowing. I did have a second opinion but it was mainly because when I needed help the first doctor didn't get back to me. The second doc I have had 14 years and he is great, but he is going to retire soon, so who knows what I will find in the future. No I have never been on cholestral drugs. It was discoved that I was hypothyroid and needed to be on medication for that for the rest of my life. You can feel really sick when your thyroid is working properly. I hope this answers your questions.

 
Old 08-29-2010, 03:09 PM   #8
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MOTHRRICK HB User
Re: new here, I have had polymyositis

You might want to read up on low dose naltrexone (ldn). I have ibm and just heard about ldn. Trying to find more.

Rick

 
Old 12-28-2010, 03:43 PM   #9
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Bloodsmith HB User
Re: new here, I have had polymyositis

A friend of mine was recently diagnosed with polymyositis and I've been hunting around online. I've found a Chinese herbal treatment. WE HAVE NOT TRIED IT YET AS I'VE JUST FOUND IT. However, as it's herbal, it should have no ill effects. I'm recommending it to my friend as well and plan to post any improvements. He's been totally unresponsive to all other treatments thus far.

Anyone trying this, please post your results, so that if it helps, others can benefit as well. Again, I don't get anything for recommending this. I just want to see others get better.

Last edited by moderator2; 12-28-2010 at 08:50 PM. Reason: please do not post websites except as described in the Posting Policy

 
Old 12-30-2010, 04:54 PM   #10
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Re: new here, I have had polymyositis

Sorry about your friend being totally unresponsive to other treatments. I understand the treatment is prednisone and either immuran or methatrexate. These are very powerful drugs. I now have normal CPK levels, hardly any pain whatsoever. This illness has its active and nonactive periods. I am very lucky to have such a possitive result, I have had friends with polymyositis that didn't respond to the drugs, and eventually passed away. It has been a worry to me since I was diagnosed in 1995.

 
Old 01-19-2011, 08:06 PM   #11
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Iodine64 HB User
Cool Re: new here, I have had polymyositis

Quote:
Originally Posted by pattianne24 View Post
I have joined several forms and read all i could about this illness. I realize that not all of us suffer the same. My muscle weakness is mostly in the legs, and the pain is horrible. I have had cronic severe pain for 15 years now. I have been on several prescriptions, currently take morophine and oxycodine. My legs have gotten so bad that I can't walk 1 block. My husband of 43 years died suddenly and now I am left alone to battle this on my own. As much as I want to get on with my life this illness is holding me back. I don't know that there are any answers for me. I responded well to prednisone and also took immuran and methatrexate for this illness. Unfortunately these meds can cause other problems, one of the side effects of the immuran was early cancer and I needed a hysterectomy. It is a nasty illness, and seems that when you get one autoimmune illness others follow, at least this has been my case. I now also have hypothyroidism, and psoratic artheritis in most of my joints. As I said, all I can do is try my best each and every day and try not to worry. Life can really suck and to think I might have another 25 or 30 years with this makes me terrified.
I have had Polymyositis for 25 years and pain was my biggest problem. I was near suicide when I was diagnosed because of the pain. All I could do was lay flat on my back and not move. Any movement was so very painful and I did not want to live if I had to deal with that pain for the rest of my life. I was 39 at the time. I am now 64. I just retired from teaching. Teaching kept my mind off of myself. Pred. did not work for me so we changed to Medrol and it works great. I don't know why, they are both steroids. Immuran and methatrexate did a number on my liver so the GI told me not to take that POISON. So I stopped, my Rhume was really mad at me when I stopped, but I figured the GI knew what was best for me. I am now trying to get off the Medrol after 25 years, but I think it is not going to happen. My adrenal gland just wont kick start. My Endo says he will be happy if they can get me down to 4 mg a day. My cortisol level drop very low when we start going down and I feel like I am dead, but I keep trying. Let me know how you are doing.

 
Old 01-20-2011, 08:30 AM   #12
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Re: new here, I have had polymyositis

I am 63, will be 64 in May, so we are about the same age. I have had this illness since my late 40's. I mentioned that my husband passed away 2 years ago. That in itself was very stressfull. I ended with psoratic artheritis and ostoartheritis in my neck, spine, hips and knees. It is a painful illness too. The problems never seem to stop with me, I was also diag with hypothyroidism and now just last month was diag with some problems with my heart rate. Life goes on, I am very tired throughout the day, it gets a little better in the afternoon. But what can I do, just carry on. The biggest problem with me is how to handle stress. I never was very good at it and I am sure that has made my problems worse. What keeps me going on is my faith. I know that I have these health problems but at our age, we still have years to go on. We can think that life isn't fair, and it hasn't been for both of us, but we have to cope the best way we can.

 
Old 01-23-2011, 09:15 PM   #13
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jymany HB User
Re: to Lodine, to Pattianne and all!

I'm julie out here in Colorado. I go get blood draw in the a.m. and see Doc on Tuesday. Am crossing fingers that CPK hasn't moved up; hope it moved down. I'm injecting 10 cc/week methotrexate and taking 5 mg/day prednisone. Was diagnosed two years ago last October. Then had the blood clots in lungs and leg as a result of the calf biopsy. I did get off coumadin. It's disappointing because I finally understand that there is no recovery from the autoimmune disease--only management. Keep up spirits, please. Not easy but we will think good thoughts for each other and keep trying. Never give up, just never give up!

 
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Old 07-15-2011, 01:10 PM   #14
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Re: new here, I have had polymyositis

I have had polymyositis since i was 36 I am now 62 and doing pretty good. I don't have much pain only when i over do then I lay down and rest. I have been on imuran and have not had any side effects so far. Maybe we can talk more and exchange ideas.

 
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